“Remember us for we too have lived, loved and laughed”
Report on efforts at the federal and state levels to restore abandoned
and neglected cemeteries from mental hospitals and other state institutions,
with recommendations for the future of the cemetery located on the
Herman M. Holloway Sr. Campus of the
Delaware State Hospital at Farnhurst
26 March 2013
Prepared by Katherine A. Dettwyler, Ph.D., DS Research & Consulting
in partial fulfillment of contract #031210, between the author and the State of Delaware,
Division of Substance Abuse and Mental Health, Department of Health and Social Services
Narrative text copyright © 2013 Katherine A. Dettwyler
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Table of Contents
Main report
Foreword ..........................................................................................................................................2
Introduction ......................................................................................................................................2
Reasons/justifications for restoring mental hospital cemeteries .....................................................4
Legal issues about patients’ rights of privacy and confidentiality (HIPAA) ...................................6
Organizations involved in restoration and funding sources ...........................................................16
Time frame and sustainability........................................................................................................17
Cemetery (re)discovery, preservation, restoration, and improvements .........................................19
Cemetery activities.........................................................................................................................26
Cemetery projects involving anthropological research..................................................................35
On-line resources ...........................................................................................................................37
Final thoughts on the Delaware State Hospital/DPC Cemetery ....................................................39
Appendix
Table 1 Organizations involved in various cemetery protection and restoration projects and
their funding sources .......................................................................................................42
Table 2 Year when restoration efforts began ..............................................................................46
Table 3 List of on-line resources, by state ..................................................................................46
Additional materials
Brochures from St. Es, Washington State, South Carolina............................................ inside cover
“How to Successfully Restore a State Hospital Cemetery” (Larry Fricks) ................. behind report
State laws pertaining to HIPAA and release of information........................................ behind report
Four articles, two from National Empowerment Center, NJ, Ohio ............................. behind report
“Native Perspectives on the Hiawatha Asylum for Insane Indians”............................ behind report
“Preservation Assessment of St. Es” (Chicora Report) ...................................... separate red binder
“An Osteological and Mortuary Analysis of the Insane Asylum of
California Cemetery, 1851-1854” (Erika Collins) ............................................. separate red binder
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Foreword
At the request of Dr. Kevin A. Huckshorn (Director of the Division of Substance Abuse
and Mental Health, Department of Health and Social Services, State of Delaware), I have
assembled information and written this report about the various mental hospital cemetery
restoration projects taking place across the U.S. as of 2012-2013. In many cases, information
was difficult to find or confirm, so this report should not be construed as exhaustive of all
cemetery restoration projects currently ongoing.
Introduction
During the 19th century, many states in the United States of America built hospitals for
the care and treatment of individuals who were not able to care for themselves. Concepts of
“mental illness” were not as clearly defined as they are today, and people with a variety of
conditions were sent to these state-run hospitals. In addition to individuals who had what would
today be diagnosed as major depression, bipolar disorder, and schizophrenia, hospitals also cared
for individuals with cognitive disabilities or limitations (MR), traumatic brain injuries (TBI),
disease-induced brain damage, seizure disorders/epilepsy, advanced syphilis, age-related senile
dementia, alcoholism, and drug abuse. Some patients stayed for only a few days or weeks, while
others stayed for years or even decades, including a number who died in the institutions.
When patients were gravely ill, it was customary for relatives and/or friends to be alerted,
so they could come and visit before the patient died. Once the patient died, their bodies were
usually returned to their families, provided the families were willing and able to arrange for their
transport and burial. In some cases, the patient had no living relatives or friends, or their
whereabouts were unknown, or telegrams were sent, but no one responded. In other cases, the
family requested that the patient be buried in the hospital cemetery either because they could not
arrange for transport and burial due to financial constraints, or simply because they thought their
loved one should be buried at the place where they had spent the last months or years of their
lives. Thus, for a variety of reasons, many people who died at these state-run institutions were
buried in cemeteries either on the hospital grounds or in nearby community cemeteries. In
addition to hospital patients, staff members were sometimes buried in the hospital cemeteries,
and some hospital cemeteries also served as “potter’s fields” for indigent members of nearby
communities.
In most cases, the burials were simple affairs, with wooden coffins, and people were
buried with no ceremonies. Occasionally, the hospital staff would hold a funeral service in the
chapel and staff members, especially those who had cared for the individual for many years,
would attend the funeral and burial. Instead of granite or marble headstones, most graves were
marked with a simple stone or metal numbered marker. The numbers on the markers
corresponded to the numbers kept in a cemetery record book of some kind. Not all of the
markers or the record books have survived the passage of time, and the locations of some graves
are now unknown, or the location is marked, but not who was buried there. At least one hospital
used cremation to reduce the bodies of patients to ashes, and the ashes were then enclosed in
metal cans and kept in a storage shed for decades.
Hospital personnel assumed, correctly for the most part, that no one would ever come to
visit these graves – the cemeteries were not intended to be open to the public and it was not
expected that relatives or friends would want to come to the gravesite to remember, mourn, or
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honor these individuals, leave flowers or wreaths, or otherwise commemorate the dead. A
number of sources have made the claim that hospitals marked the graves with numbers (instead
of headstones with the patients’ names and dates of birth and death, as was typical for the times)
in an attempt to maintain confidentiality and provide privacy to the patients. These sources
assume that hospital personally were acting in response to pressure from relatives and friends,
who did not wish the stigma of mental illness to be associated with their family or name. One
problem with this claim is that there is no evidence either to support or refute it. It seems much
more likely that permanent headstones with names and dates of birth and death were simply
viewed as too expensive and a waste of time and effort, since most of these people would not be
visited or remembered by their friends and family members, if they had any. Thus, thousands of
patients’ graves have remained anonymous, and many were forgotten and eventually lost for
decades.
The earliest restoration efforts that I’ve been able to track down began in 1989 at the
Dorothea Dix Hospital in Raleigh, North Carolina, followed by cleanup efforts in 1991 at the
Marlboro Psychiatric Hospital in New Jersey (which then was forgotten again until it was
recently rediscovered). Most restoration projects started in the late 1990s or early 2000s; over
time, more states expressed an interest in working on similar projects. Currently, I have
information about mental hospital cemetery restoration projects from more than half of the states
and the District of Columbia. Some of these projects have active committees that are working on
improvements and holding memorial services/ceremonies on an ongoing basis. Others have
stalled due to legal issues, financial constraints, or a simple lack of ongoing commitment,
enthusiasm, and momentum from those who began the process. In other words, they just ran out
of steam and are currently “on hold.” In the sections that follow, I summarize the information I
have gathered on various aspects of these projects. More information is available in the
Cemetery Access Database.
Reasons/justifications for restoring mental hospital cemeteries
According to a number of sources, there are several main reasons why an individual, or a
group of individuals, wants to restore these cemeteries. In some cases, the process of identifying
and restoring the cemeteries originated with a single individual who stumbled across the remains
of a graveyard, choked with vegetation or hidden in a forest. In other cases, the existence of the
cemetery was revealed during construction of a new building, park, playground, or road, or
during repairs to water and sewer lines. For some hospitals, the cemeteries only became a
problem when the hospital was closed and the land was to be sold or redeveloped for other
purposes. In a number of cases, former hospital patients or staff were pivotal in early discussions
about the possibility of restoring the cemeteries and identifying, or at least honoring, the
anonymous dead.
Soon, a number of other individuals or organizations joined in the planning and
organizational work, including local historians, government officials – especially those involved
in providing services to the mentally ill through state and local government agencies – and local
chapters of national mental health advocacy groups such as the National Alliance for the
Mentally Ill (NAMI) and Mental Health America (MHA, formerly the National Mental Health
Association). Patricia Deegan and Larry Fricks have been particularly active in facilitating
several of these projects.
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There are several common goals shared by the groups organizing the restoration efforts.
A primary goal is to locate, identify, restore, and protect the cemeteries where former mental
patients were buried. This is considered to be important because the fact that they were lost,
forgotten, or ignored for so many years is felt to be a reflection of the stigma of mental illness,
and the lack of dignity and respect people with mental illness were given in the past. By
restoring the cemeteries, and especially by putting up headstones with individuals’ names, a
measure of dignity and respect may be returned to these forgotten people who suffered during
their lifetimes both from their mental illness and from the way they were perceived and treated
by medical professionals and their communities. A selection of quotes illustrates this goal:
 “The resolution, first introduced in 1997, apologizes to the tens of thousands of
Minnesotans with mental illnesses and developmental and other disabilities who were
wrongly committed to state institutions & subjected to shock treatements, frontal
lobotomies, aversive treatments and isolation. WHEREAS many Minnesotans once
viewed this institutional treatment as acceptable, but now recognize how wrong this
treatment was. . . " -- Minnesota
 "It was like these people committed a crime. They were treated in life and death like they
did something wrong." – Senator Richard Codey of New Jersey
 "What we want to do is to have it understood that these were people who deserve respect
and dignity. We want people to know that mental illness is a neurological disorder, it's a
disease like heart disease or diabetes." – Rina Finkelstein, New York (Rockland
Psychiatric Center)
 “We mark graves to help us remember. To be forgotten in life and then relegated to an
unmarked grave is a disgraceful end, a sign of disdain and disrespect. Some where, some
time, these people mattered to somebody and they should not remain forgotten.” -- South
Carolina brochure
A second goal is to try to identify the individuals who are buried in each grave and to
mark each grave with a headstone that records their name, at the very least, and in some cases
also includes their dates of birth and death. Where it isn’t possible to match specific graves with
specific names, but the names are known, they may be listed on a plaque at the cemetery itself,
and/or available online. If the deceased was a member of the US military, efforts are made to
obtain a US government-issued marker noting their service to the country. General
improvements to the cemeteries – fences, gates, benches, pavilions, pathways, lights, water
features, gardens, trees, and other landscaping – are intended to make them nicer places to visit,
so that descendants or friends can visit the graves, and so people can be educated about the
history of the cemeteries and the mental institutions. In addition, restored cemeteries can then be
the sites of periodic ceremonies to remember and honor these individuals.
A third goal is to change the way the public views people living today with mental
illnesses, in particular, to lessen the stigma of mental illness and educate people about the
struggles of those with mental illness. The hope is that such projects will bring attention to the
issue of mental illness in modern society and will encourage family, friends, and the general
public to treat people with mental illnesses with more understanding, more dignity, and more
respect. By “righting this wrong” from the past, they hope to improve the lives of people today.
A fourth goal, related to both the first and second goals, is to use these projects as a
pathway to empower people who have struggled and/or are continuing to struggle with mental
illness, to give them a voice, to give them some control. In many states, former patients and/or
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current “consumers” (as some preferred to be called) are major players in the projects to restore
the cemeteries and honor the dead. In the 9 minute version of the video “Restoring Dignity,”
introduced by Rosalynn Carter, this goal is eloquently articulated by B.J. Walker, Commissioner
of the Georgia Department of Human Resources: “I believe one of the biggest gifts of this
movement is that it’s been a catalyst for a new understanding and a support for how we think
about people with mental illness and how we see them as recovering people, not as lost people.”
Legal issues about patients’ rights of privacy and confidentiality (HIPAA)
It has been virtually impossible to get a clear and consistent understanding of the role of
federal and state HIPAA (Health Insurance Portability and Accountability Act of 1996)
regulations regarding the public release of the names of individuals who are buried in cemeteries
at state mental institutions. On the one hand, many committees working to identify individuals
and provide headstones with names have been stymied by their state agencies, which refuse to
release the cemetery record books or other information about who is buried where, or which
refuse to allow headstones to be placed on graves. The officials usually claim that it violates
state HIPAA regulations to identify people who were diagnosed as having a mental illness during
their lifetimes, even if they have been dead for 100 years, 150 years, or even longer. In some
cases, state laws have been changed to exempt the lists of people buried in state institution
hospitals from HIPAA regulations. Some require the written permission of a “documented
relative,” while others place embargoes of varying lengths on the information. At least one state
Supreme Court (Nebraska) has declared this information to constitute “death records” and to not
be protected as confidential medical information under HIPAA. A variety of different solutions
have been proposed or enacted to try to circumvent the claim that HIPAA privacy rules extend
indefinitely into the past, but there is little consensus. The following sections document the
various decisions that have been made around the country at the state and federal levels.
California. State senator (later Assemblyman) Wesley P. Chesbro created the California
Memorial Project with legislation in 2002 – Senate Bill 1448. This bill was later expanded
and/or repeated (the information is not clear). Chesbro said: “This important piece of legislation
was the product of hard work between all the stakeholders working towards the common goal of
recapturing the dignity of those who died and were buried in institutions throughout the state.”
Chesbro also introduced Legislation to establish the third Monday in September to memorialize
these Californians. One section of the newly revised state code regarding mental hospitals and
disability centers now reads: “(3) Notwithstanding Sections 4514 and 5328 or any other
provision of law regarding confidentiality of patient records, the information described in this
section shall be limited to the name, date of birth, date of death, and photographic images of
any person who died while in residency at any state hospital or developmental center and shall
be made available for the purposes of the implementation of this section. The exportation and
use of these records or photographic images from state facilities shall be limited to the
information delineated within, and the purposes of, this section.” And “(5) Notwithstanding
Sections 4514 and 5328 or any other provision of law governing the confidentiality of patient
records, with respect to any monument or memorial erected consistent with this section, the
department may include, if available, the name, date of birth, and date of death, of any person
being memorialized who died while in residency at a state hospital or developmental center
and who was buried by the state.” [emphasis added].
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As far as can be determined from on-line searches, no actual headstones have ever been
placed on any graves at mental hospital/disability center cemeteries in California. I did send an
email to calnetmembers@gmail.com on October 25, 2012, but they did not respond.
Connecticut. At Connecticut Valley Hospital, Middletown, Connecticut: “Some of the
names of those buried were discovered in a book at Russell Library that catalogued their
identities as part of a Depression-era Works Progress Administration project. A legal opinion
from the state attorney general's office allowed the hospital to release the rest of the names
[other than the WPA names], and they are listed on a marker at the cemetery, along with their
corresponding grave number. A cemetery committee decided not to replace the headstones with
ones listing names, although about 100 headstones that are crumbling or unreadable are replaced
annually with new ones.”
Minnesota. In 2010, Minnesota Lawmakers passed Resolution 4, House File 1680, the
“Apology Bill.” The resolution, first introduced in 1997, apologizes to the tens of thousands of
Minnesotans with mental illnesses and developmental and other disabilities who were sent to
state institutions and provided with care that is today recognized as ineffective at best, and
harmful at worst, including restraint, shock treatments, frontal lobotomies, aversive treatments
and isolation. The bill itself did not directly address the issue of releasing patient names, but the
state has provided $750,000 or more for the “Remembering With Dignity” campaign, and much
of the money has been used to place individual memorial grave markers on graves. As of
January of 2012, more than 6,500 grave markers have been placed in institutional cemeteries.
Thus, the issue of patient confidentiality, while not directly mentioned in the materials available,
seems to have been resolved in favor of marking each grave with the individual’s name and dates
of birth and death.
Nebraska. Several years prior to 2009, the Adams County Historical Society (ACHS)
requested that Nancy Kinyoun, custodian of records at the Hastings Regional Center (HRC) and
the Department of Health and Human Services (DHHS) release the names and locations of the
individuals buried at the cemetery associated with the HRC. Kinyoun and DHHS claimed that
the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) and Nebraska's
public records statutes prevented the release of this information. The ACHS appealed and the
ruling was upheld, so the ACHS took the case to the Nebraska Supreme Court. The court found
in favor of the ACHS and ordered Kinyoun to release the names. Kinyoun and DHHS had
argued that because the people buried in the HRC cemetery had been patients at the center, it was
clear that they were mentally ill, and thus identifying them as being buried there was a release of
“medical information” protected by HIPAA. The Nebraska Supreme Court disagreed, and
upheld the ACHS view that the records are merely “death records” and, as such, are required to
be released to the public by Nebraska state law.
Relevant quotes from the Nebraska Supreme Court case of Adams County Historical
Society vs. Nancy Kinyoun [emphasis added; the full text of the decision is available online at
http://caselaw.findlaw.com/ne-supreme-court/1204850.html]:
“Kinyoun claims, and we agree, that HRC is an entity covered by
HIPAA and that the burial records constitute the “individually identifiable
health information” that HIPAA was designed to protect. And, under 45
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C.F.R. §164.502(f) (2008), “[a] covered entity must comply with the
requirements of this subpart with respect to the protected health
information of a deceased individual.” Therefore, HIPAA and its
attendant regulations do apply to deceased individuals.
Under the Code of Federal Regulations governing HIPAA and the
dissemination of private medical information, however, there is an
exemption for information required to be released by law, and 45 C.F.R.
§164.512 (2008) defines “[u]ses and disclosures for which an
authorization or opportunity to agree or object is not required.” Subpart
(a)(1) of that section defines the standard for uses and disclosures and
states that those disclosures may be made to the extent required by law, if
in compliance with and limited to the relevant requirements of such law.
“Required by law” is defined under 45 C.F.R. §164.103 (2008) as “a
mandate contained in law that compels an entity to make a use or
disclosure of protected health information and that is enforceable in a
court of law.” This provision includes statutes and regulations that require
the production of the information, such as Nebraska's public records
statutes. . . . [Kinyoun] contends that because all of those patients buried
in the HRC cemetery had been patients at HRC when they died,
releasing their names is equivalent to releasing medical records.
We do not find Kinyoun's argument persuasive, however, and we find
that the records sought are “records of deaths.” First, the information
sought by ACHS is more limited than the information available on a death
certificate. Death certificates are available to the public. Neb.Rev.Stat.
§71-605(2) (Cum.Supp.2008) requires that death certificates include the
Social Security number of the deceased, as well as “the cause, disease, or
sequence of causes ending in death”; the death certificate entered into the
record as an exhibit in this case shows the “Place of Burial or Removal.”
Second, those patients admitted to HRC were admitted for a variety of
reasons. The record reflects that patients were admitted to HRC for
issues relating to substance abuse, senility and dementia relating to old
age, various psychotic disorders, “mental deficiencies,” and other
undiagnosed mental disorders. The fact that the deceased persons were
treated at HRC does not indicate the nature of their diagnoses, or even
the causes of death -- information routinely released via death
certificates. Furthermore, the records sought by ACHS do not include
diagnosis or treatment information, but instead are limited to the names
of the deceased and the locations of burial.
CONCLUSION. Although HIPAA prevents the release of
individually identifiable medical information, it also provides for release
of information when required by state law. Nebraska's public records
statutes require that medical records be kept confidential, but exempt birth
and death records from that requirement. Our privacy laws also apply to
medical records and patient histories, but not to records of deaths. The
records sought by ACHS are records of deaths and therefore are public
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records. Kinyoun is hereby ordered to release the information under the
public records statutes. Writ of mandamus granted.”
The cemetery records for Hastings Regional Center are now available online at
http://www.adamshistory.org/images/stories/HRC_Cemetery_Records_Website_PDF.pdf. It is
not clear if any markers have been placed on graves at any of the three cemeteries in Nebraska.
Nevada. In Nevada, Senate Bill 256 was passed in 2009, designating the former
Northern Nevada Adult Mental Health Services Cemetery as an historic cemetery. No burial
location map exists that would identify who was buried where, with the exception of 11 graves.
Thus, it has not been possible to erect headstones on individual graves. The issue of the legality
of the release of patients’ names was not directly addressed in the bill, but all 767 names are
engraved on a memorial plaque at the cemetery.
New York. The effort to honor the people buried at Willard State Hospital in New York
has been led by Colleen Spellecy. The office of Mental Health has responded to FOIA requests
for the names of people buried at Willard by claiming that state and federal law prevent the
release of the information. A bill has been introduced to the New York State Legislature
(Assembly Bill A10636/Senate Bill S6805) that would revise the “mental hygiene” law and
direct the release of the name, birthdate, and date of death of all patients buried at New York
State mental hospitals and institutions for the developmentally disabled some fifty years after
their death. On June 12, 2012, the Assembly bill was referred to the mental health committee. I
have not been able to find any updated information about the status of the New York bill.
Also in New York, the situation at Gowanda Psychiatric Center Cemetery deserves
highlighting. In this instance, it was the local community who objected to placing the names of
the deceased on a marker at the cemetery. This excerpt is quoted directly from an online article
from 2011:
“David Mack-Hardiman, one of the leading organizers of the volunteers,
explained in an interview to a Buffalo News reporter on October 26, 2009:
“Records containing the names of those buried in the cemetery were lost after the
hospital shut down.” This, though, proved not to be accurate. A local archivist
attended the Ceremony of Remembrance—a moving service in which the signage
and monument were unveiled with the release of a rehabilitated red-tailed hawk,
Jewish and Christian prayers, and speeches by advocates and self-advocates. He
emerged among the reporters, activists, volunteers, and families and told MackHardiman that he had a list of names that corresponded to the numbers on the
graves. Volunteers then hoped to finish their work, to use this new information
for a memorial that would list the newly identified graves. But the local
community, according to Mack-Hardiman, resisted the erection of a marker which
would identify the names with the numbers. Gowanda is home to less than threethousand residents, and the stigma of having a loved one institutionalized still
resonates there. Many families did not want to discover that they had an aunt,
cousin, or brother who was committed to the institution. They were pleased that
the stones were cleaned and the cemetery respectfully marked, but the fear that
a family name would appear publically associated with the institution was not
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communally acceptable. Mack-Hardiman explained “Support for the restorations
was slow in coming because mental illness [and disability] has long carried a
stigma, and the institutionalized were deemed ‘not so worthy’ of proper burial by
the state that cared for them and even by their families.” The once invisible were
now seen, thanks to activist intervention, but not named. The opposition of the
good people of Gowanda to the naming is a testament to the staying power of
the stigma.” http://www.deliberatelyconsidered.com/2011/10/in-death-as-in-lifestigma-in-and-beyond-an-american-total-institution/ [emphases added]
Ohio. In Ohio, legislation was passed to allow the release of information from the
records of state mental hospitals to cemetery restoration committees, including patients’ names,
dates of births and deaths, and place of burial. I have not been able to clarify when this law,
Ohio House Bill 0398, was passed. At the Athens Asylum, headstones have been placed on
graves only when a “documented relative” has given approval. However, all the burial
information is available on line for both the Athens and Toledo hospital cemeteries.
Oregon. Oregon is the state where more than 3,500 copper canisters full of cremains
from former mental hospital patients were discovered in 2004 in a long-forgotten storage shed.
Oregon Senate President Peter Courtney sponsored a bill, Senate Bill 32, passed by the
Legislature in 2007 directing hospital officials to make public the names and birth and death
dates of former patients who were cremated and whose remains were (and still are) stored at the
hospital. The information was made available online and some family members have come
forward to claim their relative’s cremains. In May of 2011, a much more comprehensive bill
(Senate Bill 31) was passed which provides all sorts of specific details and instructions for
returning cremains to family members and for the interment of those that remain unclaimed.
Plans are underway for the remaining canisters to be viewable to the public in the building where
they have been stored, by viewing through a Plexiglas window. The names of the patients are
available on line.
Texas. In 2003, the Texas State Legislature authorized the release of patients’ names and
dates of birth and death if they died in a state mental health facility. The information was to be
released in response to a request from a “cemetery organization” or “funeral establishment” and
only “for the purpose of inscribing the name or date on a grave marker.” The system was set up
with an opt-out clause, so that the information could be released “unless the person or the
person's guardian provided written instructions to the facility not to release the person's name or
dates of birth and death.” All of the names and dates of birth and death, if known, are available
online at Find A Grave, under Austin State Hospital Cemetery.
Washington. In 2004, the Washington State Legislature changed state law to allow the
release of information about people buried at state hospital cemeteries. There was a 50 year after
death embargo on releasing the information, and it was only to be released for the purposes of
memorialization at the Ft. Steilacoom Park cemetery associated with Western State Hospital.
The cemetery was used from 1876 to 1953, thus everyone buried there is a candidate for a
memorial headstone. The following excerpt from the 2004 law provides the exact wording:
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RCW 71.05.390 Except as provided in this section, RCW 71.05.445, 71.05.630,
70.96A.150, 71.05.385, 74.09.295, or pursuant to a valid release under RCW
70.02.030, the fact of admission and all information and records compiled,
obtained, or maintained in the course of providing services to either voluntary or
involuntary recipients of services at public or private agencies shall be
confidential. Information and records may be disclosed only: [most sections
redacted]
(16) To mark headstones or otherwise memorialize patients interred at state
hospital cemeteries. The department of social and health services shall make
available the name, date of birth, and date of death of patients buried in state
hospital cemeteries fifty years after the death of a patient.
One of the newspaper articles about this cemetery restoration project said: “The
Legislature's decision to change the law effectively ended an era in which the stigma of mental
illness prevented identification of mental patients who died.” There is a searchable index to the
Western State Hospital cemetery available online through the state government website, but it
only works if you already know the name of someone you are looking for. That is, it is not just a
list of everyone who is buried there. Grave Concerns does maintain a website with all the names
of the 3,672 people buried in the cemetery, listed by last name, which is searchable.
St. Elizabeths in Washington, D.C. and the US National Archives. In September of 2012,
when I went on a tour of St. Elizabeths Mental Hospital’s West Campus in Washington, DC, the
tour was led by Thomas Otto, who works for the GSA. He has done a lot of research at the U.S.
National Archives on St. E patient records from the 19th century. According to Mr. Otto, the
policy for research conducted at the National Archives is that there is a 75 year
moratorium/embargo on releasing the names of patients in connection with their medical
information, such as a diagnosis of mental illness or the fact that they were a patient at St.
Elizabeths. Once the 75 year window has passed, however, federal HIPAA privacy rules cease
to be relevant, and it is permitted for researchers and writers to publish the real names of the
patients from mental hospitals (or at least from St. Es) in connection with their medical history
and details of treatment. If true, it would mean that anyone who died prior to 1937 could have a
headstone placed, or their name posted on a website, or indeed the details of their medical
records published without violating HIPAA regulations.
I did find a written reference to the “75 year rule” in a publication known as Prologue
Magazine (Vol. 42, No. 2), published by the National Archives. The article is by Frances M.
McMillen and James S. Kane, who have done research at the National Archives on the patient
records from St. Elizabeths Hospital in Washington, DC. The article was published in 2010, and
is titled “Institutional Memory: The Records of St. Elizabeths Hospital at the National Archives.”
The article is available online at
http://www.archives.gov/publications/prologue/2010/summer/institutional.html. The relevant
section reads: “To protect privacy, only patient files that are 75 years or older are available to the
public, and not all patient files were retained. The files examined for this article were more
observational in terms of the patient's health than deeply personal, though one may consider
reading someone else's letters or a nurse's description of a patient's habits, hygiene, or day to day
life as an intrusion into another's private information.” The article itself describes several
patients by name.
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I sent an email to Frances McMillen and she put me in touch with Bill Creech, who is the
archivist in charge of the St. Elizabeths patient records at the National Archives. I spoke by
phone with Mr. Creech, and with a lawyer for the National Archives. They did confirm that
there is a 75 year moving-wall moratorium on personal information in the U.S. National
Archives, but emphasized that this was a federal law specific to the holdings of the archives.
On 10/31/2012 I had a long cordial conversation with Joques Prandoni, Ph.D., who is a
health consultant for St. Elizabeths and the contact person for issues regarding the restoration of
the St. Es cemetery and the national memorial. Before retiring, he was the second in command
of the forensics unit at St. Elizabeths for many years, and now works as a consultant. He was
able to update me on the status of the national memorial, which is that MHA is still trying to
raise the money to create it and then to provide for ongoing maintenance of the memorial as well
as the St. Es cemetery. The plan is for MHA to take out a long-term lease of the cemetery
property and the memorial, which will be adjacent to, but not in, the cemetery, and that MHA
will be responsible for maintaining both sites in perpetuity. St. Elizabeths itself is trying to keep
the weeds and shrubs from overtaking the cemetery, but is not planning any improvements at the
time, both due to budget constraints, and because they hope to turn this job over to the MHA.
Dr. Prandoni agreed with the sentiments expressed in the Chicora Foundation report
(Trinkley 2009) on the cemetery – namely, that the cemetery should be preserved as it looked
when it was in use (1873-1983), which would mean no individual headstones on graves. He
pointed out that the Washington DC Health Department provides death certificates after 50 years
has passed following an individual’s death, and that death certificates usually include cause of
death as well as where the person was buried.
Delaware. In the summer of 2012, it was brought to my attention by one of the members
of a cemetery restoration committee in Alabama that the names of everyone buried at the
Delaware State Hospital Cemetery, along with the number of their grave marker, were already
available online as part of the Find A Grave website. The URL for the 748 individuals buried at
the DSH cemetery is available in a searchable format here: http://www.findagrave.com/cgibin/fg.cgi?page=gsr&GScid=2417778. You can search either by first name, last name, or both.
They are listed in alphabetical order by last name. A brief investigation showed that Tedd
Cocker, a genealogist and researcher from Pennsylvania, went to the Delaware State Archives in
Dover last September and was given access to their microfilm copies of the DSH Cemetery
Record Book. He laboriously entered all of the 748 entries into an Excel spreadsheet, and then
uploaded it to the Find A Grave website. At this site, others can add photographs or leave virtual
flowers, or even leave a note for others. Tedd Cocker’s email is teecee62@comcast.net. He had
no idea that this information might be protected by HIPAA and assumed that since he had been
given access to the Cemetery Record Book at the archives, that this was public information. He
has been very cooperative about working with me to correct the spelling of individual’s names in
the Find A Grave database, as I have more legible (and often multiple) renditions of patient’s
names from the ledger books.
When I informed Randy Goss, at the Delaware State Archives in July 2012 that the
names were already posted online, he was flabbergasted and seemed very upset that someone
had been allowed access to the cemetery record books. However, he never got back to me with
any concerns or further information, and the names are still available online, as no one has
contacted Mr. Cocker and asked him to remove them. So, rather by default, it seems that the
State of Delaware is taking the position that publication of the names of folks buried in the DSH
12
hospital cemetery is not a violation of any federal or state HIPAA regulations. The last burial at
the DSH cemetery was in 1983.
Recent update on federal HIPPA regulations. In February of 2013, I checked online for
updates about HIPAA, and came across some very interesting and relevant news. According to
this legal website, final HHS regulations decided in January 2013 establish a 50 year movingwall moratorium on releasing patient records. http://www.bricker.com/services/resourcedetails.aspx?resourceid=335. To quote extensively from this web site:
HIPAA Regulations Section-By-Section
General Rules for Uses and Disclosures of Protected Health
Information: Deceased Individuals
Section 164.502(f)
As Contained in the HHS HIPAA Privacy Rules
Includes changes from the January 2013 final HHS regulations
HHS Regulations as Amended January 2013
General Rules for Uses and Disclosures of Protected Health
Information: Deceased Individuals - § 164.502(f)
Standard: deceased individuals. A covered entity must comply
with the requirements of this subpart with respect to the protected
health information of a deceased individual for a period of 50 years
following the death of the individual.
HHS Description and Commentary From the January 2013
Amendments
General Rules for Uses and Disclosures of Protected Health
Information: Deceased Individuals
Proposed Rule
Section 164.502(f) requires covered entities to protect the privacy
of a decedent’s protected health information generally in the same
manner and to the same extent that is required for the protected
health information of living individuals. Thus, if an authorization
is required for a particular use or disclosure of protected health
information, a covered entity may use or disclose a decedent’s
protected health information in that situation only if the covered
entity obtains an authorization from the decedent’s personal
representative. The personal representative for a decedent is the
executor, administrator, or other person who has authority under
applicable law to act on behalf of the decedent or the decedent’s
estate. The Department heard a number of concerns since the
publication of the Privacy Rule that it can be difficult to locate a
personal representative to authorize the use or disclosure of the
13
decedent’s protected health information, particularly after an estate
is closed. Furthermore, archivists, biographers, and historians had
expressed frustration regarding the lack of access to ancient or old
records of historical value held by covered entities, even when
there are likely few surviving individuals concerned with the
privacy of such information. Archives and libraries may hold
medical records, as well as correspondence files, physician diaries
and casebooks, and photograph collections containing fragments of
identifiable health information, that are centuries old. Currently, to
the extent such information is maintained by a covered entity, it is
subject to the Privacy Rule. Accordingly, we proposed to amend §
164.502(f) to require a covered entity to comply with the
requirements of the Privacy Rule with regard to the protected
health information of a deceased individual for a period of 50
years following the date of death.
We also proposed to modify the definition of “protected health
information” at § 160.103 to make clear that the individually
identifiable health information of a person who has been deceased
for more than 50 years is not protected health information under
the Privacy Rule. We proposed 50 years to balance the privacy
interests of living relatives or other affected individuals with a
relationship to the decedent, with the difficulty of obtaining
authorizations from personal representatives as time passes. A 50year period of protection had also been suggested at a National
Committee for Vital and Health Statistics (the public advisory
committee which advises the Secretary on the implementation of
the Administrative Simplification provisions of HIPAA, among
other issues) meeting, at which committee members heard
testimony from archivists regarding the problems associated with
applying the Privacy Rule to very old records. See
http://ncvhs.hhs.gov/050111mn.htm. We requested public
comment on the appropriateness of this time period.
Overview of Public Comments
The majority of public comment on this proposal was in favor of
limiting the period of protection for decedent health information to
50 years past the date of death.
Some of these commenters specifically cited the potential benefits
to research. A few commenters stated that the 50-year period was
too long and should be shortened to, for example, 25 years. Some
supporters of limiting privacy protection for decedent information
indicated that the date of death is often difficult to determine, and
thus suggested an alternative time period (e.g., 75, 100, 120, 125
14
years) starting from the last date in the medical record, if the date
of death is unknown.
Some commenters were opposed to limiting the period of
protection for decedent health information due to the continued
privacy interests of living relatives as well as the decedent,
particularly when highly sensitive information is involved,
including HIV/AIDS status, or psychiatric or substance abuse
treatment. A couple of commenters recommended that there
should be no time limit on the protection of psychotherapy notes.
One commenter expressed concern that this modification may
encourage covered entities to retain records that they would not
have otherwise in order to profit from the data after the 50-year
period. One commenter suggested that the period of protection
should be extended to 100 years, if protections are to be limited at
all. A few commenters were opposed to the 50-year period of
protection because they interpreted this provision to be a proposed
record retention requirement.
Final Rule
After considering the public comments, the final rule adopts the
proposal. We believe 50 years is an appropriate period of
protection for decedent health information, taking into account the
remaining privacy interests of living individuals after the span of
approximately two generations have passed, and the difficulty of
obtaining authorizations from a personal representative of a
decedent as the same amount of time passes. For the same reason,
we decline to shorten the period of protection as suggested by
some commenters or to adopt a 100-year period of protection for
decedent information. We also believe the 50-year period of
protection to be long enough so as not to provide an incentive for
covered entities to change their record retention policies in order to
profit from the data about a decedent once 50 years has elapsed.
With respect to commenters’ concerns regarding protected health
information about decedents that is sensitive, such as HIV/AIDS,
substance abuse, or mental health information, or that involves
psychotherapy notes, we emphasize that the 50-year period of
protection for decedent health information under the Privacy
Rule does not override or interfere with State or other laws that
provide greater protection for such information, or the
professional responsibilities of mental health or other providers.
Covered entities may continue to provide privacy protections to
decedent information beyond the 50-year period, and may be
15
required to do so under other applicable laws or as part of their
professional responsibility. Alternatively, covered entities may
choose to destroy decedent information although other applicable
law may prescribe or limit such destruction.
Finally, we clarify that the 50-year period of protection is not a
record retention requirement. The HIPAA Privacy Rule does not
include medical record retention requirements and covered entities
may destroy such records at the time permitted by State or other
applicable law. (We note that covered entities are subject to the
accounting requirements at § 164.528 and, thus, would need to
retain or record certain information regarding their disclosures of
protected health information.) However, if a covered entity does
maintain decedent health information for longer than 50 years
following the date of death of the individual, this information will
no longer be subject to the Privacy Rule.
In summary, at the federal level, it appears that all of the medical records of patients at
the federal mental hospital, St. Elizabeths, held at the National Archives, can be released to the
public, by name, after 75 years have passed since the individual’s death. The newest HIPAA
regulations establish 50 years as the length of time that deceased individual’s medical records are
protected by the Privacy Rule. At the state level, a number of states have either declared the
burial information to be “not medical information” covered by HIPAA, or have specifically
singled out the information as exempt from HIPAA regulations under various specific
conditions, including the elapse of time (50 years in Washington State, 50 years in New York,
where the legislation is still pending), and the permission or refusal of a documented relative
(opt-in system in Ohio, opt-out system in Texas).
If the new HIPAA regulations can be clarified, it would mean that unless a state has a
longer moratorium, 50 years is the designated duration of the Privacy Rule once an individual
has died.
Organizations involved in restoration and funding sources
In various states, and with respect to St. Elizabeths at the federal level, a number of
different organizations and individuals have been involved in trying to organize, plan for, and
obtain funding and permission to preserve and restore cemeteries at mental hospitals. In some
cases, a private individual with no particular stake in the issue has stumbled across an abandoned
cemetery and brought it to the attention of local historical preservation groups or organizations
devoted to supporting the mentally ill and improving conditions for current mental patients, such
as NAMI (National Alliance for the Mentally Ill), who have then taken over the lead in
restoration projects. In some cases, a local or county or state official, or people who work for the
state’s department of mental health have become involved, and in a few of those cases efforts
have been expanded to include all the abandoned cemeteries associated with all state institutions.
Each cemetery has its own story of how/when/why the restoration efforts began, and who has
been involved. Some projects have begun their own group dedicated to the restoration of the
cemeteries, while in most instances there isn’t a formal organization, but rather a loose coalition
16
of interested individuals from various agencies and groups. Local historical societies and
librarians in charge of old hospital records may be involved, along with current or former
employees of the hospital, former patients, and even archeologists and physical anthropologists
from local colleges and universities. A lot seems to depend on local politics, and a number of
projects have started out with great enthusiasm and energy, only to falter along the way as the
specific individuals involved lose interest, get discouraged, or move on to other issues. Attempts
to reach some of the people listed as being involved have been mostly unsuccessful (that is, they
don’t return emails).
A number of different funding sources have been tapped to support the protection and
restoration of these cemeteries, ranging from local “bake sale” fundraisers, sale of memorial
bricks, restaurant fundraisers and auctions to large donations from medical companies, donations
from funeral homes and local artists, donations from local charitable organizations, grants from
various granting agencies, to appropriations from state and local legislatures providing taxpayer
money from the state’s budget. Table 1 (at the end of this report) is not exhaustive, but gives a
representative picture of the organizations and funding sources involved.
Time frame and sustainability
The earliest evidence I can find for people working to restore and maintain a cemetery
from a state mental hospital comes from North Carolina and New Jersey. In North Carolina, the
issues first came to light in 1972 on the grounds of the Dorothea Dix Hospital, although formal
restoration efforts didn’t begin until 1991.
“The cemetery had declined due to erosion, vandalism and the elements of
time. Garbage trucks drove over the cemetery edges to reach the next door
landfill. The landfill closed in 1972. At this time the hospital physical plant
manager, Dave Davis, noticed that erosion had exposed part of wood he felt sure
was caskets. Markers had slid away from depressions in the ground that suggested
graves. There were no trees except for a few pines. Employees used kitchen forks
to poke the ground locating caskets that had drifted. Staff covered the exposed
coffins with soil and seeded the area. A chain link fence was installed along the
boundaries. However, due to financial restraints the cemetery was neglected.
Many of the graves were unmarked. With the passage of time, many graves had
deteriorated significantly so that the graves had collapsed leaving depressions in
the soil. Boundaries were difficult to identify. Until 1991 the only grave sites with
tombstones were those of people whose families had the means and desire to have
a marker built. In 1991 a group of volunteers under the leadership of Dave Davis
of Physical Plant and Faye McArthur of Community Relations Department began
the task of restoring the cemetery.”
– from http://cemeterycensus.com/nc/wake/cem244.htm
In the 1990s, hospital employees looked through old records trying to identify
who was buried where. A local headstone company made small granite markers for
approximately 700 of the graves, with the person’s name and date of death. Since then,
the cemetery has again fallen into disrepair and many of the granite markers placed in the
1990s are now covered with grass and are difficult to locate.
17
In 2001, a local artist looking for her ancestors’ graves traced one of them to the
Dorothea Dix Hospital Cemetery. Because he had been a Civil War veteran (he fought
for the Confederacy), she petitioned the US Department of Veterans Affairs, and they
provided a white marble headstone for his grave. It isn’t clear what, if anything, has
happened at this cemetery since the early 2000s.
Marlboro State Psychiatric Hospital in New Jersey celebrated its 60th anniversary in
1991. At that time, as part of the ceremonies, a 12 foot by 20 foot pavilion was erected that
included bronze plaques containing the names of the 924 former patients buried in the cemetery
between 1931 and 1960. Each name could then be linked to the numbered grave. The hospital
itself closed in 1998, and for the next six years, the cemetery was cared for by inmate workers
from the Marlboro Corrections Camp. However, the prison camp itself was closed in 2004.
Several community organizations contributed to the upkeep of the cemetery, but it fell into
disrepair. Since 2004, a single individual, Ron Johnson, a member of the Veterans of Foreign
Wars, places American flags on the graves of the five veterans buried in the cemetery every
Memorial Day. Again, it isn’t clear that anything much has been done to the cemetery since the
early-mid 2000s.
For the remainder of the cemeteries, restoration efforts began in the late 1990s or early
2000s, where documented. For the remainder, it isn’t clear exactly when such efforts began.
Table 2 (at the end of this report) shows the names and dates of cemetery restoration efforts for
those cemeteries for which a specific date was mentioned:
Because of the incomplete and fragmented information available about many of these
restoration projects, it is difficult to say with any certainty which projects are active and ongoing,
which have been “completed,” and which have ground to a halt, or never really started. In some
instances, many improvements have been made, and there are commitments from state
legislatures or groups such as local historical societies, to maintain the cemeteries in the future.
In other cases, a little work has been done, and proceeds slowly as money is raised through
volunteer efforts, grants, and local fundraisers.
Unfortunately, a number of restoration efforts began with great promise and to much
public acclaim, only to amount to little or nothing. For example, in Texas, a local artist
volunteered to make a large sculpture of an angel for the restored cemetery at Austin State
Hospital. He actually made the statue, but it remains in his workshop, as the cemetery
restoration project never got to the point where it could be installed. Because maintaining these
cemeteries is a never-ending endeavor, it is difficult for local actors to sustain the momentum,
the interest, and the funding. The national memorial at St. Elizabeths in Washington, D.C. is a
case in point. The Mental Health Association is theoretically continuing with fundraising, but
the downturn in the national economy has made it very difficult to find sponsors and smaller
donors, and thus the project has never been started.
The restoration and maintenance of these cemeteries is of interest only to a relatively
small group of stakeholders, and when money is an issue – as it always is – these projects are
accorded low priority. Some of the rhetoric that surrounds these projects suggests that returning
respect and dignity to those who died long ago and were buried anonymously in these state
mental hospital cemeteries will somehow directly affect current people struggling with mental
health issues. However, a number of people have raised concerns that any monies devoted to
such projects will take away funding from programs designed to directly benefit current
18
“consumers” (patients, people under care, whatever). A few projects have been able to sustain
interest and concern because of the specific nature of the situation (the cremains at Oregon State
Hospital), the publication of books relating to the hospital or cemetery (The Lives They Left
Behind, about Willard State Hospital in New York, and Mental Ills, Bodily Cures about several
California mental hospitals), or the high public profile of the specific individuals involved (Larry
Fricks for Georgia and Pat Deegan for New York).
Cemetery (re)discovery, preservation, restoration, and improvements
The circumstances under which cemetery restoration projects have been started are
extremely diverse, depending on the context, including:
 Cemeteries on the grounds of currently operating mental hospital s (St. Elizabeths,
Delaware State Hospital, Austin State Hospital)
 Cemeteries on the grounds of now closed mental hospitals that are not in danger of being
sold or redeveloped
 Cemeteries on the grounds of now defunct state hospitals that are in danger of being sold
or redeveloped, or have already been sold and are in the process of being redeveloped
 Cemeteries that have been reclaimed by grass, shrubs, and trees and then refound
 Cemeteries that were lost, and covered over with other buildings, parks, etc., and only
rediscovered during later construction/excavation work
 Cemeteries in the middle of golf courses (Hiawatha)
The nature of the context, as well as the specific condition of the graves, will affect what
sort of restoration is needed. In some cases, the locations of some or all of the graves are
unknown – even the number of graves may be unclear. In some cases, the grave sites themselves
are detectable, but whatever markers were there originally have been removed or lost or have
sunk down below the current ground surface. In a number of cases, the above ground markers
were removed years ago to facilitate mowing the grass.
Headstones/markers. Some cemeteries have records that indicate who was buried where,
while others have inaccurate records, incomplete records, or the records have gone missing.
Where grave locations are known and the identity of the person is established, many cemetery
restoration groups have chosen to place new markers on the graves either in addition to the
original markers, or as a replacement for the original markers. Sometimes these are headstones
made of granite or marble, but other options have been used in some cemeteries. Sometimes the
headstones are designed to be flush with the ground, to facility mowing, a practice found in
many modern cemeteries. What, exactly, is etched or engraved on the headstones also varies.
Most often it includes the person’s name, but some also include dates of birth and death, if
known.
As far as I am aware, none of them include any other information about the person,
although some people have suggested that the headstones should or could, such as whether they
were a patient or an employee, and even what their diagnosis was. The point of the latter
suggestion is to let people know that many of those buried in these cemeteries did not have
conditions that would today be labeled as “mental illness,” including seizure disorders, syphilis,
age-related senility, alcoholism, mental retardation (cognitive impairment), and traumatic brain
injury, as well as others. At the same time, this approach then continues the stigma of having
actually been diagnosed with a mental illness and having died in the institution. Given the
19
ambiguity of many of the early diagnoses, and the changing criteria for diagnosis, it isn’t at all
clear what purpose would be served by having the diagnosis listed on all gravestones.
Yet another suggestion has been to indicate cause of death on the gravestones, as many of
the people who died while living in mental hospitals died of reasons not directly related to their
diagnosis. For example, a significant percentage of long-term patients ended up contracting and
dying of tuberculosis. Others, including short-term patients, died of smallpox or typhoid. Some
of those with seizure disorders died in status epilepticus. Other patients died of cancer, or
pneumonia, or dysentery, or malaria, or a heart attack, or a failing liver or kidneys. Many died
simply from old age.
Most of the work done to install or replace headstones has been done by volunteer
groups. In a few cases, a local gravestone company has contributed the stone or done the etching
at a reduced cost. A final point about headstones is that the United States government will
provide a headstone for any military service member whose grave is unmarked. At some of the
cemeteries undergoing restoration, these headstones have been provided upon furnishing proof
that the individual was indeed a veteran. Specially-designed upright marble or granite
headstones are available to mark the graves of pre-World War I veterans, including Civil War
Union soldiers, Confederate war dead and Spanish-American War dead
[http://www.cem.va.gov/cem/hmm/pre_WWI_era.asp].
In addition to documenting the individual’s service in the US military, several other
criteria must be met in order to receive a government-supplied military headstone. First, the
grave must be unmarked. The graves in the DSH cemetery are considered “marked” because
they have numbered markers which, in conjunction with the cemetery ledger, identify who is
buried under each marker. In addition, only a family member (direct or indirect descendant of
the deceased) can request a government headstone, or they can give written permission to a nonrelative to do so.
“The Department of Veterans Affairs (VA) furnishes upon
request, at no charge to the applicant, a Government headstone or
marker for the unmarked grave of any deceased eligible Veteran in
any cemetery around the world, regardless of their date of death.
For eligible veterans that died on or after Nov. 1, 1990 and whose
grave is marked with a privately purchased headstone, VA may
also furnish a headstone or marker to supplement the graves or a
Medallion to be affixed to the privately purchased headstone.
Flat markers in granite, marble, and bronze and upright
headstones in granite and marble are available. Bronze niche
markers are also available to mark columbaria used for inurnment
of cremated remains. The style chosen must be permitted by the
officials in charge of the private cemetery where it will be placed.”
http://www.cem.va.gov/hmm/
Clean-up, fences, walls, gates, signs, statues. Again, depending on the specifics of a
particular site, cemetery restoration may include determining the boundaries of the cemetery,
cleaning up trash, clearing brush and trees, and mowing the grass. Some cemeteries are already
clearly marked, but others are not, and in many instances, fences or walls have been repaired or
erected to delineate and mark the boundaries of the cemetery. This helps keep out random
20
people tromping around in the woods and fields, and identifies the cemetery for people looking
for it, or for a specific grave. At some cemeteries, gates have been repaired, replaced, or
installed for the first time to mark the entrance to the cemetery. Some have gotten new signs.
Inside the cemetery, a number of restoration projects have included some sort of pavilion or
information kiosk that provides historical information about the cemetery, a map of the
cemetery, a list of who is buried where, if known, the “rules” established for conduct and
decoration in the cemetery, and contact information. Examples include the following:
A.
Informational sign erected at the entrance to Western State Hospital, Washington
B.
Informational Marker at Toledo State Hospital Cemetery, Ohio
21
C.
Bronze plaque with names at Marlboro State Hospital, NJ (erected in 1991)
Close-up (left) and overview, (below),
of the “pavilions” at Marlboro with
the bronze plaques showing burial
number, name, and date of death.
D.
Sign and gates at Lakeshore Psychiatric Hospital Cemetery in Ontario, Canada
22
E.
Sign and gates at Austin State Hospital Cemetery, Texas (wrought-iron gates were
donated by a local artist). Statue has never been installed.
A famous local sculptor, Gilbert Beall, volunteered to produce and donate a
commemorative bronze sculpture called “The Unknown” for the Austin State Hospital Cemetery.
According to Beall, the woman symbolizes Texas, while the child represents the mental
hospital's patients. Because the cemetery restoration project never moved forward, the sculpture
remains with the artist. At one time there were plans to sell small versions of the sculpture to
raise money for the project, but that also never materialized. http://www.gilbertbeallart.com/
F.
Informational sign at Foxborough State Hospital Cemetery, Massachusetts
23
G.
Sign at Nevada State Hospital Cemetery
H.
Sign and angel at Cedar Lane Cemetery, Georgia
“Cedar Lane Cemetery: In 1997, a cemetery restoration began here that triggered a
movement to memorialize patients buried at state psychiatric hospitals nationwide. After
discovering nearby neglected cemeteries interred some 25,000 people, members of the Georgia
Consumer Council pledged to restore the burial grounds and build a memorial. A grassroots
campaign raised funds to erect the adjacent gate and display 2,000 numbered iron markers
displaced from graves over the years. A life-sized bronze angel was placed 175 yards south of
here to serve as a perpetual guardian.”
24
I.
Marker in the middle of a golf course marking the Hiawatha Insane Asylum Cemetery,
with patients’ names, Canton, South Dakota; the marker is enclosed by a fence.
J.
Sign at the Gowanda Psychiatric Center Cemetery, New York
J.
“At the entrance of the cemetery, a granite headstone was erected. Also surrounded by
mums, the monolith holds smooth pebbles for the deceased of Jewish* faith. A dove bracing for
flight, perched on a branch of flowers, is etched into the stone, which reads: IN MEMORY OF
THE FORMER RESIDENTS OF THE GOWANDA STATE HOSPTIAL / GOWANDA
PSYCHIATRIC CENTER, 1895—1994, REST HERE NOW IN PEACE, “DEATH IS NO
MORE THAN PASSING FROM ONE ROOM INTO ANOTHER. BUT THERE’S A
DIFFERENCE FOR ME, YOU KNOW, BECAUSE IN THAT OTHER ROOM, I SHALL BE
ABLE TO SEE” – Helen Keller” -- http://www.deliberatelyconsidered.com/2011/10/in-death-asin-life-stigma-in-and-beyond-an-american-total-institution/ *Note: it is a Jewish tradition to
place a stone on the grave of a loved one when you visit.
25
Landscaping and benches. Depending on the specific circumstances of the cemetery,
some have been spruced up by the planting of trees, shrubs, and flowers. Benches have been
installed at some cemeteries for visitors to sit on. Pathways have been restored in various ways
including paving, gravel, or stepping stones. I haven’t seen any mention of providing water (for
drinking or for a fountain), or restroom facilities, but as this is not an exhaustive survey of all
hospital cemetery restoration projects, they should be ruled out.
Museums. As far as I can determine, there are no museum displays devoted specifically
to any of the mental hospital cemeteries. In Oregon, the building where the cremains have been
stored is to be open to the public, with a Plexiglas window for viewing of the cremains canisters
on their shelves. St. Elizabeths in Washington, DC has a small museum in the lobby of the
current hospital building devoted to the history of the institution, but nothing specific relating to
the cemetery. There has been some discussion about building a small museum of some type to
accompany the National Memorial on the grounds of St. Elizabeths, but that entire project is
mostly “on hold” at the moment pending fundraising efforts.
As indicated above, and in the section on URLs and videos, a number of the cemetery
restoration projects have a presence on the internet. Some of the web sites are quite elaborate
and detailed, with historical background and photographs of the restoration, and are regularly
updated. Others are very brief, and/or have not been updated for many years. There are several
sites that are intended to be clearinghouses for all such projects, but none of them are
comprehensive or kept up to date in a timely fashion.
Statues. Several cemetery restoration projects have incorporated angels (Cedar Lane,
GA) or Christian crosses (Dorothea Dix, NC) into their efforts. It should be pointed out that not
all of the people buried in these cemeteries identified themselves as Christian during their lives,
and certainly not all Christians believe that angels are appropriate symbols of death and a
possible afterlife. If religious symbols are to be incorporated into future cemetery restorations, it
would be more appropriate if a wide range of religions were represented, or if religious symbols
were simply not used at all.
Cemetery activities
A wide array of activities has been carried out as part of various cemetery restoration and
commemoration projects. A number of these activities are still in the active process or are
planned for the future, as funding becomes available. Various fund-raising efforts have already
been described above.
Clean up and headstone replacement. Usually, the first step in any cemetery restoration
project, after identifying the cemetery and searching for records, is to mark the boundaries and
clean any overgrowth of trees, shrubs, vines, and weeds. Next, efforts are made to locate and
identify specific graves, and in most cases, to add a headstone of some kind to the grave.
Sometimes the original marker is no longer present, other time the new headstone is added
alongside the original marker. In many cases, the markers have subsided down below ground
level, so various means – long probing metal rods, or ground-penetrating radar – are used to
locate the markers, which are then reinstalled at current ground level.
26
For many projects, because of the cost and effort involved, the placing of gravestones
proceeds slowly, over a number of months or years. In other contexts, especially where the
records are missing or incomplete, the names of individuals are inscribed on a plaque, and in one
case various broken and otherwise unplaceable markers were gathered together at a “Wall of
Remembrance.”
The Wall of Remembrance at Dorothea Dix State Hospital, North Carolina.
There is some disagreement over whether or not the original numbered markers should be
replaced with new headstones. First, there is the issue of HIPAA applicability and the notion of
confidentiality for the patient and their relatives/descendants, which has already been described.
Second, some people feel that while the cemeteries should be cleaned of overgrowth,
sunken markers brought up to the surface, and displaced markers returned to their original
locations, overall, the cemeteries should only be “restored” to their original appearance. For
example, some of the people involved in the St. Elizabeths project in Washington, DC feel that
the cemetery should remain the rather sad, lonely, barren place that it always has been, in
accordance with the standard tenets of historic preservation. They feel that sprucing up the
cemetery is fine, but that adding elements that reflect modern sensibilities may destroy the
ambiance and therefore would be inappropriate for an historic cemetery.
An ongoing issue for all these projects is the continued upkeep that must be done so that
the cemetery doesn’t fall back into disrepair and overgrowth. These issues are important for all
of the groups due to the ongoing efforts and costs involved. Who will pay for periodic mowing
and weeding, the replacement of broken or stolen headstones, and the repair of damage from the
elements or from vandals and trespassers? Who will maintain the necessary organization and
enthusiasm required once the initial shakers and movers have died or moved on to other things?
Should this be the responsibility of each state’s department of health and social services, or the
local historical society, or NAMI, or some other group(s)?
Dedication, memorial, and remembrance services. A number of projects have included a
formal ceremony of some sort to mark either the beginning or the end of the restoration, or both.
Some of these were one-time affairs, at the opening or dedication of the newly restored
cemetery, while others are ongoing, even annual events meant to remember those who were
buried at the site as well as to bring attention to the concerns of those currently dealing – directly
or indirectly – with mental illness.
27
Ceremonies to honor those buried in the unmarked graves at state mental hospital
cemeteries range from small to quite elaborate, from full participation of all the stakeholders,
including relatives of the deceased, to only a handful of dedicated volunteers. The following
paragraphs provide a representative sample of the typical activities that are part of such
ceremonies, and some of the issues that they raise.
Participants. Dedication or memorial ceremonies at former state mental hospital
cemeteries are usually organized by the same people who were responsible for restoring the
cemetery. Thus, participants typically include:
 interested volunteers from the community
 members of the restoration committee
 former employees of the institution
 relatives (mostly descendants) of the deceased
 members of the hospital’s administration or governing board
 representatives from local mental health advocacy groups, such as NAMI, including
current “consumers”
 representatives from local, county, or state agencies that provide services to the
mentally ill (and developmentally disabled, for some institutions)
 representatives of local, county, and state governments such as the mayor, the
governor, and US Senators and Representatives
 representatives from religious groups (priests, ministers, rabbis, traditional leaders)
 representatives from US military veterans organizations, when applicable
 members of the local media (newspaper and TV reporters)
Several issues deserve mention in terms of who attends such ceremonies. First, it can be
very difficult to track down descendants or other relatives of the deceased – especially where
records are destroyed, missing, incomplete, or unavailable because of HIPPA concerns, or where
no one has had the time or energy to put in the required effort to trace descendants. Even if
relatives have been located and informed, many may not be interested or they may not able to
travel to the cemetery. Second, a number of the online accounts of cemetery restoration projects
and dedication/remembrance ceremonies specifically mention that local political figures and
state mental health administrators were invited (and some even responded that they were going
to attend) but then did not show up when the time came. This is viewed by mental health
consumer advocates as evidence of on-going disrespect for both the people who are buried in the
cemeteries as well as those who are currently dealing with mental illness. Thus, it is critical that
ceremonies be scheduled at times when it is most likely that such individuals will attend, and the
importance of their attendance must be emphasized when they are invited. Third, a number of
ceremonies have included religious aspects, including sermons, prayers, and music. In most
cases, these activities are limited to Christian perspectives, even though people of many different
faiths, or no faith, may be buried in these cemeteries. It probably isn’t feasible for any ceremony
to include representatives of all the faiths, as well as agnostics and atheists, but an attempt should
be made not to overemphasize Christianity, and not to assume that everyone present at the
ceremony wants to hear anything about God, Jesus Christ, Heaven, or any other beliefs specific
to only one religion.
28
Activities. Typically, a variety of people speak at such remembrance ceremonies,
including one or two individuals from each group of stake-holders (mental health advocates,
former employees, current “consumers,” mental health administrators, politicians, religious
leaders, the restoration committee, local historians, Sons of Union Veterans, etc.). Often a brief
history of efforts to restore and improve the cemetery is provided, as well as information about
current treatment of the mentally ill. Often, one or two specific individual’s stories are
recounted, to give names, faces, and personhood to a few of the people buried under the
numbered markers. One or more of the speakers usually issues a call for continued work on
removing the stigma of mental illness and providing proper respect and care to those dealing
with it.
In Georgia, as part of a state-wide conference in 2000 on treatment of the mentally ill, Dr.
Tom Hester, the medical director of Georgia’s mental health system offered an emotional
apology:
"I am sorry," said Dr. Tom Hester while addressing the consumer
audience, according to a Macon Telegraph article. "I am sorry on
behalf of the state of Georgia, I am sorry on behalf of institutions,
which, in the past, despite whatever intentions they may have had,
have trampled human spirits, have not allowed recovery to flame.
I’m sorry we have overused medications. I am sorry we have
overused intrusive measures like restraint and seclusion."
http://www.silcga.org/articles/SILCREPORT.pdf
In addition to speakers, other activities include:
 Music, including choirs and bagpipes
 Reciting of poems (some written specifically for the occasion by consumers or the
state’s Poet Laureate)
 Reciting of prayers, lighting candles, or other religious activities
 Reading out loud the names of those buried in the cemetery, either in alphabetical
order or by order of death/burial
 The laying of wreaths of flowers, or flowers on upright stands
 The placing of US flags on the graves
 The unveiling of signs or other entrance markers, statues, plaques with the names of
the deceased, “Historic Cemetery” designations, etc.
 Visits to the graves of relatives and friends
 Various other activities, such as one project (Medfield, Massachusetts) that included a
contest among local high school students to come up with a quote to be engraved on
the entrance sign, where the winner was announced at the dedication ceremony
At the Bryce Hospital Cemetery dedication service in Alabama, the activities included
bagpipers, a bugler who played Taps, a minister who offered a prayer, and a former patient who
performed a song called "Heavy Burden." In addition, Alabama's poet Laureate Sue B. Walker
penned and recited an original poem titled "In Remembered Lives We Live Anew."
In California, where there are many mental hospital cemetery projects underway,
ceremonies are held annually at multiple sites on "Remembrance Day," which is the third
29
Monday of September. In 2004, at Patton State Hospital in San Bernardino, California, a Native
American spiritual expert chanted a prayer.
The former site of the Hiawatha Hospital for Insane Indians in Canton, Ohio is also the
site of yearly remembrance ceremonies. They are led by Harold Ironshield and include
traditional native prayers and sacred songs, and traditional foods are prepared and offered to “the
Pitiful Ones” (those buried in the cemetery).
At Medfield State Hospital Cemetery in Massachusetts: “A contest was held to come up
with an appropriate quote to be used on a stone marker to be placed at the cemetery’s entrance.
The political science students at Medfield High School took part and came up with a variety of
quotes. The one selected read: “Remember us for we too have lived, loved and laughed.” That is
now located on the impressive granite stone at the entrance to the cemetery. When the movie
“Shutter Island” was being filmed, the memorial stone with that quote and the entrance into the
cemetery featured prominently in one of the movie scenes; sending the quote and the cemetery
out to a world-wide audience.” [Source: http://medfield.patch.com/articles/remember-thoseburied-at-medfields-state-hospital-for-they-too-have-lived-loved-and-laughed#photo-6048853
30
The following photographs illustrate some of the activities carried out at ceremonies
across the country:
A speaker at the Athens, Ohio dedication ceremony
31
The dedication ceremony at the Northern Nevada Adult Mental Health Services
Ceremony, January 21, 2011. This photo shows representatives of the Sons of Union Veterans
of the Civil War.
32
The two images above show the informational displays prepared for the
dedication ceremonies at the Northern Nevada Adult Mental Health Services Ceremony.
A PowerPoint presentation is running in the background of the first image.
The stone monument listing the names of those buried, along with funeral-style flower
arrangement at the Friends of the Northern Nevada ceremony.
The website maintained by the Friends of the Northern Nevada Adult Mental Health
Services Cemetery is particularly thorough and well-organized. If you spend some time looking
33
at the various parts of the website, you will get a good feel for a typical dedication ceremony and
the activities they include. Please see:
http://friendsofnorthernnevadaadultmentalhealthservicescemetery.com/
When possible, friends and relatives of the deceased have been included in the process of
raising money and placing the new headstones. One example is this image from the Athens,
Ohio cemetery web site:
34
Cemetery projects involving anthropological research
There are several cemetery reclamation/restoration projects that have included
anthropological research on the skeletal remains from mental hospital cemeteries. In some cases,
the cemetery, including skeletal material, was discovered during a construction project. In other
cases, graves were deliberately excavated for scientific analysis. When physical anthropologists
and/or archeologists excavate human skeletal remains, they usually try to determine sex, age at
death, cause of death, unusual skeletal or dental features, traumatic injuries, disease processes,
activity patterns during life, and ancestry (“race” isn’t a real biological phenomenon, but
sometimes region of ancestry can be narrowed somewhat according to anatomical shape/size,
especially of the skull and face bones, and dental characteristics).
The following list includes all those projects involving physical anthropologists and/or
archeologists of which I am aware, but is no doubt incomplete:




California – Stockton State Hospital, CA (unknown number of graves, 1851-1854); ~30
graves uncovered during construction in 2005; excavated and analyzed by an MA student
from Chico State, Erika Collins (2009); est. ~2,000 buried in 3 cemeteries in same area
http://www.csuchico.edu/anth/pdf/Erika%20Collins%20thesis.pdf
Colorado – Colorado Insane Asylum, 155 of 200 reported burials were excavated and
analyzed; Principal Investigator Dr. Ann L. McGennis, Department of Anthropology,
Colorado State University, Ann.Magennis@ColoState.EDU; results to be presented at the
2013 meetings of the American Association of Physical Anthropologists, April; also one
publication in press in the journal Social Science History.
Florida – Dozier School for Boys, Marianna, Florida; anthropologists from University of
South Florida, including archeologist Dr. Richard Estabrook, Director, Central
Regional Center of the Florida Public Archeology Network, Crystal River,
restabro@usf.edu and Forensic anthropologist Dr. Erin Kimmerle, kimmerle@usf.edu
[Sent email to Dr. Kimmerle, no response]
http://www.npr.org/2012/10/15/162941770/floridas-dozier-school-for-boys-a-true-horrorstory. Apparently, the State of Florida is trying to stop the investigation and exhumation
of bodies. I could not find any publications by Kimmerle or Estabrook related to the
work at Dozier.
Indiana – Vigo County Home, IN (~1890-1910?); 12 graves (of unknown number, ~100200) uncovered during construction, excavated and analyzed; Principal Investigator Dr.
Shawn M. Phillips, Department of Earth and Environmental Systems, Indiana State
University, Terre Haute, Shawn.Phillips@indstate.edu. Dr. Phillips has given several
lectures on his work in Indiana, including one in January 2013, “The Vigo County Home:
Digging into the Past: This presentation gives an overview of the accidental discovery,
excavation, and study of nineteenth-century graves from the Vigo County Home
Cemetery. The ongoing investigation is uncovering clues about what life was like in the
past and how the County Home served the constituents of Terre Haute and Vigo County.”
“Over the summer, those burials were the focus of intense work as a team of archaeology
students from Indiana State University labored to carefully locate more than 100 graves.”
“In the meantime, the 12 graves disturbed last summer must be relocated to Highland
Lawn Cemetery, Phillips said. The carefully documented remains are in safekeeping at
Indiana State University until that work is ready to begin, he said.” Highland Lawn
35


Cemetery site: http://www.terrehaute.in.gov/departments/cemetery/highland-lawncemetery-1 https://isu-aceweb001.indstate.edu/CourseStatus.awp?~~13WOVCDIGPAS -http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=2411728 (Vigo County Poor
Farm Graveyard) and Glenn Home Children’s Cemetery (Vigo County)
http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=2229349
http://tribstar.com/news/x1456430134/ISU-anthropology-team-presents-findings-fromwork-on-graves-at-former-Vigo-County-Home-site [Emails sent to Shawn Phillips on
2/17/2013 and again on 3/14/2013, but no response.]
New York – Oneida County Asylum for the Mentally Ill in Rome, NY (1860-1895);
Principal Investigator Dr. Shawn M. Phillips, Department of Earth and Environmental
Systems, Indiana State University, Terre Haute, Shawn.Phillips@indstate.edu
From Dr. Phillips website: Oneida County Asylum for the Mentally Ill. The research
question for this project investigates the health consequences of long term exposure to an
institutional environment. In this study I utilize historical documents and skeletal remains
associated with the asylum which was in operation from 1860 to 1895. These sources of
data provide information on the daily activities, experiences, quality of life, and health
conditions present at the asylum. Since the institution was a custodial facility, where
inmates remained during the extent of their adult lives, it is possible to test for the
consequences of institutional life. This study demonstrates implications for the
consequences of medical treatment and helps to elucidate cultural understandings of a
variety of diseases, especially mental illness. This project has spawned over a dozen
conference presentations, two articles, and a monograph is currently being prepared for
publication as a book.” [Note: Dr. Phillips has not responded to several emails sent in
February and March 2013.]
o “County institutions as crucibles of social judgment: Bioarchaeological evidence
of the consequences of disease and social stigma.” Northeast Anthropology
Spring 2001 61:27-47.
o “Deviancy to mental illness: Nineteenth century mental health care.” In, Science
and Society Through Time, Neil Schlager, ed. New York: Gale Press (2000).
o “Recovering lost minds: Evidence of insanity in a 19th-century almshouse
skeletal sample.” In, In Remembrance: Archeology and Death, David A. Poirier
and Nicholas F. Bellantoni, eds., pp. 79-92. Westport, CT: Bergin & Garvey
Press (1997). [Available at the University of Delaware Library].
o “Inmate life in the Oneida County Asylum, 1860 to 1895: A biocultural study of
the skeletal and documentary records.” Monograph under review for publication
as a book by the New York State Museum Press.
o “Worked to the bone: The biomechanical consequences of ‘labor therapy’ at a
nineteenth century asylum.” In, Human Biologists in the Archives: Demography,
Health, Nutrition and Genetics in Historical Populations, D. Ann Herring and
Alan C. Swedlund and Anne Herring, eds., Cambridge: Cambridge University
Press. (2003). [Available at the University of Delaware Library].
Wisconsin – Principal Investigator [Ph.D. student] Brooke Boulware Drew, Department
of Anthropology, University of Wisconsin, Milwaukee, boulware@uwm.edu. “As for the
collection of remains being studied at U-W Milwaukee it stays with the University. Each
person is individually preserved and remembered. If family comes forward those
36
remains will be handed over to relatives.” [Reports below available electronically from
Kathy Dettwyler].
o Bioarchaeological and Archival Investigations of the Milwaukee County
Institution Grounds Cemetery Collection: A Progress Report by Brooke Drew.
Continuing bioarchaeological and archival research on the Milwaukee County
Institution Grounds Cemetery collection is presented. As reported elsewhere, the
beginning stages of a multidisciplinary analysis of this late 19th and early 20th
century institutional cemetery has led to the identification of a number of the
1,649 individuals excavated. Included in this discussion will be new case studies
that continue to demonstrate not only the interpretive potential of an integrated
archaeological, osteological and documentary approach, but also reveal the life
histories of a few of the poor and disenfranchised individuals interned in this early
Potter’s Field. Event Date: Jan 10, 2013 Organization: SHA 2013 Conference on
Historical and Underwater Archaeology
o Individual Skeletal Identification: A Comprehensive Analysis of the Milwaukee
County Institution Grounds Cemetery, Wauwatosa, WI by Brooke Drew
Organization: Society for American Archaeology 77th Annual Meeting
Conference Start Date: Apr 20, 2012
o The Milwaukee County Institution Grounds "Forgotten" Cemetery: An Integrated
Approach to Individual Skeletal Identificationby Brooke Drew. In 1991 and
1992, 1,649 burials were excavated from the unmarked Milwaukee County
Institution Grounds (MCIG) cemetery. The skeletal remains and their associated
artifacts are presently being curated within the University of WisconsinMilwaukee Department of Anthropology. This author is currently attempting to
integrate historical documentation such as a register of burials, coroner’s inquest
reports, and county death certificates with spatial archaeological data, grave
goods, and osteological demography in an attempt to facilitate identification of
individuals. More specifically, an integrated, searchable document database will
be utilized in conjunction with ArcGIS spatial data and digitized osteological
assessments such as sex, age, ancestry, pathologies, and trauma to assign probable
identifications. This dual use of historical documentation and archaeological
evidence to elucidate the past is one of the hallmarks of historical archaeology.
Event Date: Jan 5, 2012 Organization: Society for Historical Archaeology
On-line resources
Specific projects by state. There are a number of on-line resources about various mental
hospital cemetery restoration and remembrance projects. Table 3 (at the end of this report) is by
no means comprehensive, but represents most of the websites I visited in the preparation of this
report.
General information websites, including videos. In addition to the specific state-related
websites listed in the table above, a number of more general sources are available online and
should be checked for further information, including:
37











http://www.nasmhpd.org/docs/policy/cemetaries.pdf -- NASMHPD POSITION
STATEMENT ON STATE PSYCHIATRIC HOSPITAL PATIENT CEMETERIES
http://ncmhr.org/cemetery.htm -- National Coalition for Mental Health Recovery site,
“State Hospital Cemetery Restoration” page. Note: This is an active site, in general,
but this part of the site – which looks like it was set up to be a one-stop location for
information about all mental hospital cemetery restoration projects – has not been
populated with information except for one link, about Danvers Hospital in New York.
http://lunatickfringe.wordpress.com/cemetery-restoration/ -- Lunatic Fringe maintains
an extensive website, including a section on “Cemetery Restoration” with many
(many, many) articles about cemetery restoration projects from around the country.
New articles are being added all the time, and are placed at the top of the web page.
http://www.memorialofrecovereddignity.org/ -- The Gardens at Saint Elizabeths:
Memorial of Recovered Dignity.
http://www.asylumprojects.org/index.php?title=Main_Page – A Wiki that anyone can
edit, with information about mental hospitals around the world
“From Numbers to Names: State Hospital Cemetery Restoration” (Pat Deegan, 2010)
http://www.youtube.com/watch?v=A1bgJX93_II 14 minute video about Danvers
State Hospital Cemetery restoration, in Massachusetts. Pat Deegan also has a number
of other videos on various issues relating to mental health.
“Mental Health Activists Restore Cemeteries” (Mental Illness Watch, miwatch.org,
2009) http://www.youtube.com/watch?v=ktarDD7OSSo 4 minute video about the
discovery of the cremains at Oregon State Hospital.
“St. Elizabeths Dedication of National Memorial” (Mental Illness Watch,
miwatch.org, 2009) http://www.youtube.com/watch?v=KLyovKHDjzc 1.5 minute
video with snippets from the 2009 announcement at St. Es.
“Unseen & Unheard” 2010 -- Saint Elizabeth's Hospital” (American University
School of Communication, 2010) .
http://www.youtube.com/watch?v=QQDgPyrQtW8 4 minute trailer for a
documentary on St. Elizabeths. Includes footage of Dr. Jogues Prandoni.
http://www.memorialofrecovereddignity.org/video_main.htm
o Video2.htm -- 'Recovered Dignity', featuring Rosalynn Carter and others, who
share the story of cemetery restorations led by consumers (short version - 10
minutes).
o Video3.htm -- The story of the project (national memorial at St. Es). An episode
from NBC’s Today Show - 'Strong at the Broken Places' . includes Larry Frick
from Central State Hospital, Georgia Project
o Video5.htm -- How it all began. Another episode from NBC’s Today Show - 'City
Of The Lost Graves' . About the discovery of the cemeteries at Milledgeville,
Georgia (Bud Merritt).
o 'Recovered Dignity', featuring Rosalynn Carter and others, who share the story of
cemetery restorations led by consumers (long version).
“We can finish the story of their lives” (KOMO news story, 2009)
http://www.komonews.com/news/63488827.html 2.5 minute video about the Grave
Concerns project at Washington State Hospital.
38
Final thoughts on the Delaware State Hospital/DPC Cemetery
Now that you have a better idea of what has been done around the country to restore
mental hospital cemetery grounds and provide some belated measure of respect to those buried
therein, the time has come to discuss these issues with respect to the cemetery on the Herman M.
Holloway, Sr. Campus. There are a number of concerns that do not apply to the DSH/DPC
cemetery grounds, at least at this time. First, there are no plans to close the mental hospital or
sell the land to another entity, or construct anything on the site of the cemetery. Second, because
the cemetery is located at the back of the campus, in a place where few people would stumble
across it accidentally, yet where employees regularly pass by, it is in little danger of vandalism or
damage. Third, currently the cemetery has a very low profile in the community – most people
are unaware of its existence, and few people come to visit. For all of these reasons, there should
be little controversy about any plans to make the site nicer.
As far as providing headstones with names, dates of birth and death, and other
information for the graves, there are several issues. One is that headstones are expensive. Given
the current economic situation at the national and state levels, it is probably unrealistic to expect
the state to contribute money to such an endeavor. Thus, it will require private fundraising
efforts to raise money, talk a stone company into donating stone and/or the labor and materials
for etching, organize volunteers with the proper expertise to set the stones, etc. Another issue is
whether or not providing headstones is even desirable, as it will change the historic nature of the
cemetery. Finally, there is the issue of HIPAA restrictions. The federal government (seems to
have) decided that 50 years after the date of death is the limit of federal HIPAA restrictions.
Other states have passed specific laws either allowing the release of names, allowing the placing
of headstones, or the listing of names on plaques, and/or declaring death information to not be
classified as protected medical information. The State of Delaware has not expressed any
objections to the online publishing of the list of internments at the Delaware State Hospital
Cemetery on www.findagrave.com. Thus, it would seem that there would be little official
objection to erecting gravestones at the cemetery, or to having a plaque or monument of some
kind listing the names of the individuals buried there, their dates of birth and death, etc. In either
case, whether a decision is made to provide headstones, or merely a listing of the names on a
plaque, more research will need to be done to cross-check and confirm the information listed
online at www.findagrave.com to make sure it matches what is in the cemetery ledger and other
sources of information we have on these individuals. This will be necessary because of the
various spellings of people’s names, difficulty of reading the cemetery ledger handwriting, etc. I
am more than happy to volunteer to undertake this task.
Personally, I think a plaque listing the grave numbers and names and dates, would be
preferable to individual headstones. If would be nice to have the list organized both numerically
(which reflects date of death) and alphabetically, by the last name of the deceased. It would be
nice to have these available on a plaque at the site, as well as perhaps inside the Springer
Building Lobby, along with a display of information about the cemetery, and perhaps a brochure
that included a map of the cemetery showing how the numbered markers are arranged.
A nice sign, with the name, dates of use, and a brief historical note about the cemetery
could be erected at the site. It might also be useful to have signage along Coleman DuPont
Highway (Route 13) at the entrance to the facility, noting that the cemetery is there, and then
more signs to direct people to the parking lot next to the cemetery. Otherwise, it will be difficult
for people to know of its existence and to wend their way through the labyrinth of roads on
39
campus. Other improvements might include a fence around the cemetery, some nice
landscaping, perhaps a bench or two, or a covered pavilion for people to sit in the shade or out of
the rain. It could be something very simple, similar to a camp ground facility, or something
rather nicer, if funds were available. Some accommodation for bathroom facilities might be
required, and certainly the site would need to be wheelchair accessible. A few examples are
provided here for illustrative purposes:
The “Sons of Rest” pavilion at Tower Grove Park in St. Louis
(http://www.romeofthewest.com/2009/05/photos-of-tower-grove-park.html)
The “Heman Park Pavilion” in University City, Missouri
(http://archinect.com/people/project/34707874/heman-park-pavilion/58833976).
40
The “Fairway Park Pavilion” in Miami Beach
(http://www.flickr.com/photos/cityofmiamibeach/4994086116/sizes/o/in/photostream/).
Personally, I would prefer not to see any religious iconography or references at the
cemetery such as Christian crosses or angels, given that people of many faiths (or no faith), are
buried there. However, this is a subject for discussion by all of the stakeholders.
If improvements are made to the physical grounds, such as a pavilion, or a plaque, it
would be nice to have a dedication ceremony when they are complete, and perhaps a yearly
commemorative ceremony held on a specific date each year when the weather is likely to be nice
(such as late spring if some flowering trees and bushes are planted around the cemetery). The
dedication ceremony at the Nevada cemetery described earlier could be a model, as could the
yearly California ceremonies held the third Monday of September, or on October 10th, which is
designated as “World Mental Health Day.”
Finally, if you decide to move forward with some sort of restoration and remembrance, I
think it would be a good idea to have a series of articles in the Wilmington News Journal about
the cemetery and some of the people buried there. It could be good public relations for the
Division/Department, as well as a means of letting people know that the cemetery is there, that
the names are available at www.findagrave.com, and that people are welcome to come visit their
relatives or friends. Again, I would be happy to write these articles – perhaps in conjunction
with someone from the newspaper, highlighting specific individuals as well as the overall
project, and letting people know what is being done.
Please feel free to contact me if you have any questions or concerns.
41
APPENDIX – Tables
Table 1
State
Alabama
California
Organizations involved in various cemetery protection and restoration projects
and their funding sources
Name of Restoration
Committee
Bryce Hospital
Historic Preservation
Committee
State wide:
California Memorial
Project; California
Mental Health
Advocacy
Conference
Connecticut
Georgia
Idaho
Illinois
Indiana
Mental Health Care
Historic Preservation
Society
Organizations involved
Funding sources
Alabama Department of Committee is selling
Mental Health
inscribed memorial bricks;
hoping to raise $100,000
Member of state
Not clear
senate/assembly began
project; Peer/SelfAdvocacy Unit at
Protection & Advocacy,
Inc., the California
Network of Mental
Health Clients, and
Capital People First and
other local “people
first” chapters
Connecticut Valley
Not clear
Hospital (still in use,
CEO is heading up
project to restore
cemeteries)
Georgia Consumer
Royalties from 2008
Council; Larry Fricks,
reprinting of Peter
Dir., Office of
Cranford’s 1953 book about
Consumer Relations,
Milledgeville; state provided
Div. of MH/MR/SA
initial funds to restore and
spruce up cemetery, has
committed funds for
“perpetual upkeep” in the
future; other fundraising
projects
Asst. Hosp.
Not clear – hospital budget?
Administrator; and
Admissions Dir. SHS
Group begun by a
Not clear
former employee of the
hospital
Local genealogist,
Buchanan group* offered
spokesperson from
$1500 to pay for new
Department of
registry.
Metropolitan
42
Development
Bluegrass Community
Technical College,
Kentucky Heritage
Council, Latitude Artist
Community (disabled
art group), state,
Kentucky Archeology
Survey
Former patient, state
agency (DHHS), private
agency (AMISTAD)
Kentucky
Eastern State
Hospital Cemetery
Club, or Eastern
State Hospital
Cemetery
Preservation Project
Maine
Maine Cemetery
Project
Massachusetts
Danvers State
Memorial Committee
(Pat Deegan),
Medfield State
Hospital Cemetery
Restoration
Committee,
Westborough State
Hospital Cemetery
Project
Former patients, MH
activist Pat Deegan &
her National
Empowerment Center,
state DMH personnel
Minnesota
"Remembering with
Dignity" Project,
Anoka Metro
Regional Treatment
Center Auxiliary,
Rochester State
Hospital Cemetery
Recognition Group
Dakota County
Historical Society,
NAMI of SW
Minnesota, State of
Minnesota, former
employees, local
Representative,
“Advocating Change
Together” – a St. Paul
nonprofit
Adams County
Historical Society,
Nebraska DHHS,
Nevada Mental Health
& Development
Services
Nebraska
Nevada
New Jersey
Friends of Northern
Nevada Adult
Mental Health
Services Cemetery
President of State
Senate (Richard
Finance & Administration
Cabinet, Division of
Engineering and Contract
Administration
Campaign to raise $50,000 to
design & install memorial.
$10,000 donation from Elsie
& William Viles Foundation
(local charitable foundation).
Deegan’s org. got a grant of
$58,000 from Center for
Mental Health Services for a
study of the history of
consumer/survivors in the
mental health system.
Medfield received some
“appropriated monies” from
an unspecified source.
Westborough reported funds
were available after closure
of hospital.
$950,000 in state funds
(through 2008) for
Remembering with Dignity
project and to State
Historical Society
Not clear
Not clear, although city and
state have cooperated with
restoring cemetery from
previous incarnation as a
children’s playground
Attempts to get NJ state
government to pay for work;
43
New York
Willard Cemetery
Memorial Project
North Carolina
Ohio
Oklahoma
Oregon
Pennsylvania
South Carolina
South Dakota
Codey), Historian of
Evergreen Cemetery
(before his death)
People Inc., local
politician who is on
board for Rockland Psy.
Ctr. As well as the
RPC’s Director of
Clinical Services,
NAMI-FAMILY
Burley Mitchell, former
chief justice of N.C.
Supreme Court
Friends of Athens
Asylum Cemeteries,
and Toledo State
Hospital Cemetery
Reclamation
Project/Committee
No name
No name
Curator of manuscripts
at Ohio University
(where old records are
kept); NAMI
4 cemeteries, only
one has name for
committee, WSH
Cemetery
Restoration
Committee
Committee to
Preserve and Restore
Historic Cemeteries,
at the Mental Health
Association
No name.
For Warren State
Hosp., administrators
from the hospital.
Head of OK DMHSAS
Oregon State Senate
President,
spokeswoman for OSH
and/or allow inmates from
Department of Corrections to
help clean up.
2010, State of NY gave
$10,000 for RPC cemetery
cleanup
Donations of headstones
from a local headstone
company; donations and
volunteers from public.
Fundraising by Friends of
Athens Asylum Cemeteries
to raise money for
headstones
Not clear
"The memorial, which could
cost up to $500,000, is
currently funded by the
state's Percent for Art in
Public Places program. The
law requires 1 percent of
direct construction funds of
new and renovated state
buildings with construction
budgets of $100,000 or more
to go toward acquiring works
of art."
For WSH, donations from
volunteers, the public, and
the hospital’s operating fund.
Administrators at
SCDMH Office of
Client Affairs, Mental
Health Association
Not clear.
Local American Indian
activists.
Not clear.
44
Texas
No name
Director of
maintenance at hospital
Washington
(State of)
Grave Concerns,
People from Grave
Concerns, Lakewood
Historical Society, local
funeral home
Washington
DC
National Memorial at National Association of
St. Elizabeths’
Consumer/Survivor
Federal Memorial of Mental Health
Recovered Dignity
Administrators
(NAC/SMHA) and
National Association of
State Mental Health
Program Directors
(NASMHPD)
State Historical
Society; County
Planning Director, local
historian
Wisconsin
Not clear. Artist offered to
donate statue, another iron
worker offered to make
gates.
Sold dahlia bulbs and
calendars, had fundraisers at
local restaurants; auctions,
raffles, to raise money; in
2009 got $12,000 grant from
Optum Health (corporation);
also in 2009 - state's
federally funded
Transformational Mental
Health Project
Still trying to raise money.
Not very successful so far;
everything on hold.
Not clear.
* Buchanan Group is a long-established mortuary company that provides embalming, funeral
services, and manages graveyards in Indy. The city mowed the grass at the cemetery.
45
Table 2
Year when restoration efforts began
Cemetery name and state
Milledgeville, Georgia
Connecticut
Danvers State Hospital, Massachusetts
Western State Hospital, Washington
SC Lunatic Asylum, South Carolina
Augusta Mental Health Institute, Maine
Rochester State Hospital, Minnesota
Willard State Hospital, New York
Oregon State Hospital, Oregon
Medfield State Hospital, Massachusetts
Toledo State Hospital, Ohio
Eastern State Hospital, Kentucky
Warren State Hospital, Pennsylvania
Milwaukee Hospital, Wisconsin
Northern Nevada Adult Mental Health
Services Cemetery, Nevada
Central State Hospital, Indiana
Rockland Psychiatric Center, New York
Westborough State Hospital, Massachusetts
Table 3.
Year restoration efforts began
1997
1998
1998
2000
2000
2000
2004
2004
2004
2005
2005
2005
2006
2007
2008
2010
2010
2012
List of on-line resources, by state
Cemetery Restoration
State
Alabama
California
California
Connecticut
URLs
http://www.mh.alabama.gov/brycehospitalproject/historic_markers.html
http://www.tuscaloosanews.com/article/20100416/NEWS/100419657
http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=2392077
http://cw.ua.edu/2010/09/14/bryce-committee-retains-history/
http://www.californiaclients.org/projects/ca_mem_description.cfm
http://www.dmh.ca.gov/services_and_programs/state_hospitals/patton/default.asp
http://lang.sbsun.com/projects/lostamongus/displayarticle.asp?part=5&article=art03_
patton&page=3
http://www.usgennet.org/usa/ca/county/sanjoaquin/stknhosp1.htm
http://tech.groups.yahoo.com/group/weirdwi/message/11918
http://freepages.genealogy.rootsweb.ancestry.com/~mcampbel/html1.htm
http://www.recordnet.com/apps/pbcs.dll/article?AID=/20051228/NEWS01/5122803
53/1001
http://www.laweekly.com/2002-11-14/news/a-trip-to-purgatory/
http://www.disabilityrightsca.org/news/Ukiah_Daily_Journal-2009-09-19.htm
http://www.godfreydata.org/cvc.html
46
Cemetery Restoration
State
Georgia
URLs
Restoration Guide:
http://www.memorialofrecovereddignity.org/documents/State_Hospital_Restoration_
Guide__14890068cemetery4.pdf [Includes Dr. Hester's apology and info on other
states' projects]
http://www.silcga.org/articles/SILCREPORT.pdf
Hawaii
http://archives.starbulletin.com/2008/07/02/news/story07.html
Idaho
http://www.healthandwelfare.idaho.gov/Medical/MentalHealth/AdultMentalHealth/S
tateHospitals/tabid/495/Default.aspx
Illinois
http://www.pistar.com/news/x1673647856/Luciano-Old-Book-has-a-new-markerand-admirers
http://genealogytrails.com/ill/kane/elginstatehospitalcemetery.html
Indiana
http://www.usgennet.org/usa/in/county/vanderbergh/statehospital.html
http://www.wthr.com/Global/story.asp?S=12972202 (Central State)
Indiana
http://tribstar.com/news/x1456430134/ISU-anthropology-team-presents-findingsfrom-work-on-graves-at-former-Vigo-County-Home-site
Kentucky
http://www.rootsweb.ancestry.com/~asylums/eastern_ky/index.html
http://kykinfolk.com/esh/
http://www.familytreemagazine.com/article/state-hospital-cemetery-preservation
Maine
http://www.maine.gov/dhhs/riverview/history/remembrance/index.shtml
http://www.kjonline.com/news/maines-forgotten-dead_2012-05-26.html
http://www.amistadinc.com/the-cemetery-project
http://www.pressherald.com/news/forgotten_2012-05-27.html
Maryland
http://www.springgrove.com/
Massachusetts http://dsmc.info/ Slide show for all of Massachusetts:
http://www.power2u.org/articles/history-project/slides.html
Massachusetts http://medfield.patch.com/articles/remember-those-buried-at-medfields-statehospital-for-they-too-have-lived-loved-and-laughed#photo-6048853
http://northamptonstatehospital.com/
http://www.wickedlocal.com/westborough/news/x161460418/Effort-begun-to-markgraves-of-the-forgotten#axzz2LNPanvgk
http://wbshcemeteryproject.blogspot.com/ (website set up, no content)
http://www.youtube.com/watch?v=A1bgJX93_II (video about Danvers)
http://users.rcn.com/tclement/NSH/Main.html
http://www.communityadvocate.com/2012/06/01/local-group-will-not-letwestborough-state-hospitals-patients-be-forgotten/
Minnesota
http://www.asylumprojects.org/index.php?title=Willmar_State_Hospital
http://www.asylumprojects.org/index.php?title=St._Peter_State_Hospital
http://www.accesspress.org/2009/07/childrens-needs-faribault-1879/
http://www.placeography.org/index.php/Faribault_State_School_and_Hospital,_Fari
bault,_Minnesota
http://www.asylumprojects.org/index.php?title=Anoka_State_Hospital
47
Cemetery Restoration
State
URLs
http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=1974295
http://www.minnpost.com/politics-policy/2007/11/grave-grave-group-restoresminnesotans-forgotten-lives
http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=83641
Missouri
http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=2277513
Nebraska
http://www.adamshistory.org/images/stories/HRC_Cemetery_Records_Website_PDF
.pdf (patient #s, names, dates of death only); general info:
http://www.adamshistory.org/index.php?option=com_content&task=view&id=35&It
emid=1
http://dhhs.ne.gov/Pages/Newsroom_Newsreleases_2012_Sept_NRC.aspx
http://www.nebraskahistory.org/databases/norfolk.htm
http://dhhs.ne.gov/Pages/Newsreleases-2011-Oct-Cemeteries.aspx
http://nebraskarootsandramblings.blogspot.com/2009/09/nebraska-regional-centercemetery.html
Nevada
http://friendsofnorthernnevadaadultmentalhealthservicescemetery.com/
New Jersey
http://www.forgottenphotography.com/trenton/index1.html
http://www.asylumprojects.org/index.php?title=Trenton_State_Hospital
http://travelwp.com/2009-0825-marlboro-psychiatric-hospital-cemetery-page.htm
http://marlboro-coltsneck.patch.com/articles/marlboro-psychiatric-hospital-cleanupstill-planned
New York
http://nysasylum.com/willard/index.htm
http://www.suitcaseexhibit.org/indexhasflash.html
http://inmatesofwillard.com/tag/willard-state-hospital/
http://saveagrave.net/willard-state-hospital
http://www.lohud.com/article/20110930/NEWS03/109300337/Advocates-seekdignity-Rockland-Psychiatric-Center-patients-buried-anonymity
http://www.asylumprojects.org/index.php?title=Rockland_State_Hospital
http://www.deliberatelyconsidered.com/2011/10/in-death-as-in-life-stigma-in-andbeyond-an-american-total-institution/
http://www.mhacatt.org/index.php?Operation%20Dignity
North Carolina http://cemeterycensus.com/nc/wake/cem244.htm
http://www.ncdhhs.gov/dsohf/services/dix/history.htm
Ohio
http://www.friendsofathensasylumcemeteries.com/
http://test-www.mh.state.oh.us/assets/cemetery-reclamation/cemetery-restorationguidelines.pdf
Ohio
http://toledostatehospitalcemetery.org/
http://www.sent-trib.com/opinion/state-hospital-cemeteries-no-longer-forgotten
Oklahoma
http://places.newsok.com/hidden-oklahoma-norman-hospital-once-a-mythicalcity/article/3546956
http://www.findagrave.com/cgibin/fg.cgi?page=cr&CRid=2289107&CScnty=2141&
http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=687700
48
Cemetery Restoration
State
URLs
Oregon
http://www.oregon.gov/oha/amh/osh/pages/cremains.aspx
http://www.youtube.com/watch?v=ktarDD7OSSo (video about cremains)
Artist's website at www.davidmaisel.com
Also a book "Library of Dust." Photo gallery exhibit in NYC in 2010.
Pennsylvania http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=2190701
http://www.pa-roots.com/index.php/warren-county/168-warren-countycemeteries/468-warren-state-hospital-cemetery/
http://www.findagrave.com/cgi-bin/fg.cgi?page=cr&CRid=2190701
http://www.timesobserver.com/page/content.detail/id/506277.html http://www.paroots.com/index.php/warren-county/168-warren-county-cemeteries/468-warrenstate-hospital-cemetery/
http://freepages.genealogy.rootsweb.ancestry.com/~njm1/dixbeta1.htm
South Carolina http://www.state.sc.us/dmh/client_advocacy/cemetery_brochure.pdf
South Dakota http://www.power2u.org/downloads/NativePerspectivesPeminaYellowBird.pdf
http://cantonasylumforinsaneindians.com/history_blog/
Texas
www.gilbertbeallart.com ("The Unknown" sculptor); "Life at the Texas Lunatic
Asylum" book by Sarah Sitton, http://www.amazon.com/1857-1997-CentennialAssociation-Students-University/dp/0890968594
Washington http://www.wshgraveconcerns.org/
http://www.digitalarchives.wa.gov/Collections/TitleInfo/1236 database of names
http://www.asylumprojects.org/index.php?title=Tacoma_State_Hospital
Washington, http://www.chicora.org/pdfs/RC514.pdf 2009 Assessment
DC (St. Es)
http://www.memorialofrecovereddignity.org/
Wisconsin
http://tech.groups.yahoo.com/group/weirdwi/message/11918
http://www.jsonline.com/news/milwaukee/73170932.html
http://www.asylumprojects.org/index.php?title=Milwaukee_County_Asylum
49